One year ago today our lives changed forever

 I used to wonder all the time when I would feel like an adult. Having a career, getting married, having children, none of that ever made me feel like an adult. I've always been responsible but I also always felt like I was still a kid. Until I heard Keira's diagnosis and had to sign paperwork for my baby to have her first blood transfusion. That was it, the day that I was unmistakably an adult. It seems impossible that a whole year has gone by. Our family has been changed forever. We now know how precious every moment is, how nothing can be taken for granted and how absolutely amazing people can be to one another.

We've had a tough year for sure. We know that there are many others who have it much worse and many who would have given anything to hold to their babies for 365 days after their diagnosis. I'd like to think that we have something to do with why Keira is coming through all of this so well but really I know that we're getting through this because our daughter is so incredible. I know with every fiber of my being that Keira will beat this and go on to get nothing less than the best that the world has to offer. She simply has to.

It's the holiday season......

Thanksgiving was awesome! We had such a wonderful time at my cousin's new house. Keira enjoyed the turkey enough to have seconds. Her appetite has been wonderful without steroids or an appetite stimulant so we are thrilled. One of the drugs she is taking (not sure which) is causing sleeplessness. Since last week she has been getting up at 4 a.m and cannot get back to sleep. It has been tough on us because she gets up several times during the night and then is ready to go at 4. We haven't been this tired since we had infants. Last night she work up at 4 but went back to sleep until 7 so I'm really hoping she is going to get back to a normal sleep schedule.

We are so very thankful for how wonderful Keira is doing. We have now been through three consecutive months without a hospitalization. There isn't much to blog about because she is simply doing great!!!!

We tried to take a picture for our Holiday cards today but my camera decided to stay at my cousins and help with leftovers and I don't love the ones from the iphone so we'll try again tomorrow but here is a sneak preview.

Keira's last chemo treatment is scheduled for April 4, 2015

It is good to know there is an end in sight and they are predicting that Keira will finish six months sooner than they thought she would  when they gave us an update in January.  Keira continues to respond well to treatment and overall is doing really well. She has gained weight and looks much healthier. She is back on steroids so she is eating everything in sight.

Last week Keira and Brendan got to model ins a fashion show at a Kisses for Kyle event they had so much fun. Halloween was wonderful and they are so excited for Christmas. Being back to work is tougher than I imagined it would be, it is really hard sometimes to focus when in my heart I want to be with Keira. I'm beyond grateful for my job and the ability to keep it but I underestimated how tough it would be to juggle so much.

A tough part about having a child with cancer is that you get to know a lot of other kids and families battling cancer. Last week we learned that a young man that we knew lost his battle. He had gone through treatment once and then relapsed. He was a teenager so Keira didn't spend much time with him but his younger brother is her age and she played with him all the time at clinic. Keria also loved his mom, she was always sitting in her lap and playing with them.

Hearing about a loss stirs up so many emotions, my heart aches for his family, I am comforted that he is finally at peace and as horrible as it is to admit thankful that it wasn't my baby. Every day with Keira is a blessing!

The kids asked me to tape them "making a show" it is pretty cute and you can see how well Keira is doing.

http://www.youtube.com/watch?v=fPzXBUODCXU&feature=youtu.be

Feeling good!

Keira is doing really well. She will begin the maintenance phase of her treatment on October 29. During maintenance her chemo will be delivered in lower doses and she will have to go to the clinic about once a week. She will continue this treatment for the next 2.5 to 3 years. We are really getting into our new routine, Keira's teacher is here three days a week and she is doing very well. We are still able to get out a lot but soon with flu season we will have to be a lot more selective about where and when we go out. The good thing about maintenance is that she should have good white blood counts unless she gets sick. Unlike the earlier phases of treatment when the chemo caused her white blood cells to drop all the time. 

Keira's hair is coming back in. She can still lose it anytime she gets a certain medication that she will need periodically for the duration of her treatment but for now I think we might actually see some hair for the winter. 

We are still having a hard time getting calories into Keira. Even with Pediasure and an appetite stimulant it is tough because she wants to eat cucumbers and apples all day long. I have to actually tell her "no more cucumbers unless you dip them in dressing" or "no more apples until you eat some ice cream". 

She is in good spirits. This morning when she woke up she told me "I must have overslept" I asked her why she said that and she said "you were already up". "I know, there was someone using a chain saw or something this morning before 7:15 on my day off" I told her. "Why" she asked. "I don't know maybe they were cutting down a tree but it wasn't very nice for them to be out there that early". Her response.... "Poor tree, I hope it will be ok. I love trees".... honestly I don't think there is a kinder kid in the whole world. 

Oh yeah an entire month with no hospitalizations!

Keira was not in the hospital overnight for the entire month of September. Quite amazing! Hopefully October goes this well!

Well that was pretty much, what is the word I'm looking for?... Normal.

Keira is doing great. This weekend on the spur of the moment (a few days in advance) we decided to go to my parents house three hours away. The road trip was super fun and Keira did great. I had to pack her meds and braces but I barely thought about the fact that she could get sick and we would be stuck there. (Ok, barely is a bit of an exaggeration but it didn't occupy my mind the entire time so I think we are making progress.)

Keira is wearing her leg braces all day now. She is learning how to put them on by herself. As she does with everything, she is taking it all in stride.

Her home bound schooling started today. Her teacher will be here Monday, Tuesday and Wed. for about an hour and forty-five minutes. She did very well tonight so hopefully it stays that way.

I've been updating infrequently because everything is going so well.... hopefully it stays this way!!!!

Bella Ballerina.... YAY

Yesterday I took Keira to the shoe store and they were able to fit Bella Ballerina sneakers over her braces. She was thrilled and so was I. Other than new cool shoes there is not much to update everyone on (which is wonderful). Keira is getting chemo pretty much every week at the clinic but no chemo at home right now which is very nice. Yesterday the kids were talking about Halloween costumes, this year is flying by.

Hard to believe it is September already!

Keira is doing great. She had chemo two days last week so her appetite isn't as good as it could be but she is still eating well. When we were in the hospital a couple of weeks ago they wanted to give her a feeding tube but we convinced them to try an appetite stimulant first and she has put on 3.5 pounds since then which is a lot for someone so small.

On Thursday she was fitted for leg braces, she needs them because one of her medications affects her reflexes and she has been having a hard time walking. The braces are actually really cute she got to pick a design and she doesn't seem to be too concerned about them. The only issue is that she has to wear high top sneakers with them and we haven't picked them up yet. This might not seem like a big deal but Keira likes to wear dresses all the time and not just casual dresses but very fancy dresses with pretty shoes. Any time I try to put her in sneakers it is a battle so hopefully we'll be able to find dresses that  work with high tops.

Tonight our amazing neighbors took us out to dinner for my birthday and Keira got sick at the table, it was a shock because she hasn't been sick since we were on vacation a couple weeks ago. The restaurant cleared out and I'm sure there were some complaints. I felt awful but while I was cleaning her up our friends cleaned up the table and she got through the rest of the meal without issue. We were able to have a great time despite everything.... a glass of white wine makes it easier to deal with pretty much anything!

The hardest thing about childhood cancer is that it never takes a break. Even when Keira seems to be fine there is always something she is struggling with. We are very lucky that her treatments have become much less intense and are "supposed" to get even easier as we approach her one year anniversary in December. As an outsider it might be hard to believe but there are times that I don't even think about everything that is going on with her. Unfortunately, there is always a reminder to bring us back to reality.

Vacation was amazing!

 Keira was discharged from the hospital on Monday 8/19 and we left for vacation. We visited her Aunt's farm and then headed down to Virginia Beach. It was an absolutely amazing time. We came back the next Monday and Dad went back to work on Tuesday. Mom-mom will be coming down from Sunday to Thursday for the year to care for Keira, I can't imagine what we would do without her.

 We are feeling really good about both being back to work for the first time in nine months! Brendan Jr. starts Kindergarten on Tuesday so we are all very excited for him. Keira knows that she won't be able to go and she seems to be taking it well but she does still ask occasionally why she can't go and I explain it to her but I'm not sure she really gets it. She tells me that she "won't make the other kids sick because she doesn't have a fever" and it makes me feel bad. We've told her it is because she could get sick from the other kids but I'm not sure she believes us.

 Keira has another round of chemo starting this Tuesday but it shouldn't be as intense as the last one and there are no scheduled hospital stays so hopefully we can all be home together for a while!

Counts are back down

Keira's counts went down significantly instead of coming up. I think I jinxed us by getting excited that she could come home. She is feeling good, eating well and has no fever so that is good news. Now we wait....

Pins and needles once again

Keira is feeling much better today. Her appetite and energy level are normal, and she hasn't had a fever since last night. Her counts came back up significantly but she is still neutropenic. Her Dr. believes she will be coming home on Friday if she continues to do well. There may still be a chance for vacation after all….. it would be wonderful!

Admitted

Keira was admitted last night. She is now neutropenic so she will stay in the hospital until her counts come back up. It could be days or weeks. Maybe by some miracle she will be out by Saturday and all better so we can take vacation but I'm thinking next summer is a better bet.

UGH.... the E.R. again.

Keira had a blast at her birthday party! We had so much fun and were so glad she was able to be there and enjoy it. Today we went to the clinic, her counts are up so they told us we are good to go for vacation..... we came home, she took a nap and woke up with a 102.7 fever. So, she is getting comfortable in the E.R. This is the highest fever she has ever had so we are of course very concerned. She could come home tonight and get high doses of antibiotics at the clinic or the next 3 days (since she is not neutropenic) or they will admit her. We likely won't know how they will handle this for several hours. Other than the fever she was perfectly fine, no aches, pains or any other symptoms, just a little sleepy so hopefully they will fix her right up!

On another note, below is a picture of the O'Neill family, with our lemon smiles.... getting ready for the Alex's Lemonade stand million mile run / walk..... go team Keira!!!!!

Happy Birthday to you.... Happy Birthday to you

Today the twins turn five! So very hard to believe we've been blessed with our babies for five years. Keira is doing really well. She had a rough couple of days at the beginning of this week and her counts came back down but we are looking forward to her party this weekend.. We've been on pins and needles all week hoping that she is able to stay out of the hospital and with two days left I'm hoping I'm not jinxing us by posting. She had to go the clinic today and she asked us this morning... "do I need to get a beepy machine?" (that's what she calls her pump) and we told he we didn't know and she said " A beepy machine, even on my birthday no fair".... She did end up needing a beepy machine for platelets and I agree NO FAIR but she is home now and we are getting ready for their birthday dinner (tacos of course) and to open presents so they are really excited.

It's the little things!

Keira went in for Chemo on Monday but we were pleasantly surprised when the doctor told us she only had to stay one night instead of five. She is home and doing ok but the side effects are definitely kicking in and we've been told that this combination is going to be tougher on her than anything she has had before. We are keeping our fingers crossed that she won't be in the hospital for her Birthday on August 8 or for her party on August 10 and that she feels well enough to enjoy it.

Yesterday Brendan Jr. painted a seashell for Keira and gave it to her as soon as he got home. He was so excited to give it to her and said he made it to make her feel better. She took it and said "Brendan this is so beautiful you're the best brother ever" and gave him a big hug than she told him "I will keep this with me all the time so I can think of you even when we aren't together". It was so awesome, I wish I got it on video. So cool to see that even with everything this little girl is going through she still takes pleasure in the littlest things. My daughter has already taught me more than I will ever teach her and she continues to amaze me everyday. I am so blessed to have such beautiful children inside and out.

I can't wait until the day when cancer is a distant memory until then, we'll continue to find joy in the little things because Keira wouldn't have it any other way.

Keira is home

Keira came home on Monday, she is doing well and eating a lot. Hopefully we can fatten her up. if she makes counts on Monday we are back in the hospital for five days but it is nice to be home for now.

Felling better but not ready to come home just yet

Keira is feeling much better. She had company yesterday which was absolutely wonderful! We are just waiting for her counts to come up at this point. Hopefully that will happen soon. Her doctors are seriously considering a feeding tube because she is down to 28 lbs. She is eating well so they are going to hold off to see if we can't get some weight on her. Of course, we are really hoping that she doesn't need a feeding tube but it will likely be very hard to get weight on her without one because she is so high energy when she feeling well. She lost the little bit of hair she had so she really looks sick which is hard to take. We need those thoughts and prayers.... this round of chemo isn't even half way over and she is already having a really hard time.

Back in the hospital but at least we know what is going on

This morning we found out that Keira has a condition called c diff. It is caused by the antibiotics she takes three days a week to prevent her from contracting a life threatening pneumonia. Apparently the "good bacteria" that your body needs to process waste have been depleted. We don't know how severe her case of c diff is yet or how they plan to treat her. I will update when we know more.

Update - Keira's case is mild. They will treat her with an oral medication that she can even take at home. She will be discharged when her counts recover. Last time it took 13 days, hopefully this time will be much sooner.

Our first time traveling

  We found out on Wednesday that Keira's counts were very low but Dr. Halligan told us we would be fine to visit my parents because the chief of Oncology at the local hospital studied under him. Luckily, we made it through the long weekend with no fevers so no hospital visits were necessary. We went to Knoebels on Thursday and Friday and Keira had a blast on the rides. She basically slept through an awesome fireworks show on Saturday but we got her to watch some and she seemed to enjoy them. 

 Unfortunately, The chemo is really taking a toll on her, she won't eat, gets sick frequently and is exhausted pretty much all the time. We have five more weeks of really intense Chemo to get through and I hope they go by fast. It is really tough on all of us to see Keira suffering. It especially takes a toll on her brother because he doesn't understand what is going on. He keeps getting frustrated with her because all she wants to do is sleep and he is quite jealous of all the attention she gets from us because we are so concerned about her. 

Crying happy tears!

The results of Keira's bone marrow biopsy are back and she is "within the normal range".... sounds so simple but it is proof that the Chemo is working and the cancer cells are being destroyed. If you've been following the blog you may recall that her doctor's expected her to be cancer free on Chemo in January but she wasn't and that changed her to a "high risk" patient. They were careful to point out to me when they shared the news that his doesn't change her treatment plan, she is still considered high risk. They also told me that her odds of being cured do not change. She still has an 80% chance of being cured and they won't consider her cured until she completes her treatment in two and half years and then stays cancer free without chemo for five years.

That being said, this is amazingly good news!!!! Now that we know the Chemo is working, it simply needs to stay that way...... PLEASE PLEASE PLEASE keep thinking of and praying for our baby. She is one amazing little girl with an incredible spirit and a complete blessing to us. We know that all the positive energy being sent her way is helping to make her better.

I'm not sure how you are supposed to celebrate something like this.... I'm just so glad that we get to figure it out.

Summer, summer, summer time.....

Mom is back to work, Dad is home for the summer and everything is going well. Keira has been on steroids and getting high doses of Chemo. She is experiencing a lot of side effects but her counts are high and we haven't had to go to the E.R. with fever so we are very thankful. We are planning a trip to visit mom-mom and pop-pop for Fourth of July weekend. This will be the first time traveling. We got approval from her oncologist and were thrilled to find out that the chief of Oncology at their local area hospital studied under Dr. Halligan so if anything happens we know our Dr. will be taken seriously and his directions will be followed. It's only three hours away but of course we are nervous. If we get to go we'll be visiting Knoebels which is one of the twins favorite places. So far Keira has been able to enjoy the summer so we're hoping she stays out of the hospital and gets to have more fun!

Hide the pickles and cheese sticks............ steroids again!

The past two weeks have been really great while we had a break from chemo. Keira has been in great spirits, the picture is her "modeling" on the front lawn so I would take her picture. She decided to where a fancy dress to go to breakfast for Daddy.on Father's Day. Though she really doesn't need any occasion to get dressed up.

Keira made counts today and started back on Chemo.. She is also taking a round of Steroids. She is only taking them for 7 days straight and then gets a break before starting them again in July. Hopefully the 4 A.M. cravings will be kept to a minimum.

Super Keira strikes again!

A few months ago Keira was filmed at clinic getting her vitals done and having a spinal tap. This video will be used to edcuate patients and parents on what this procedure is and how it is performed. Check out our amazing litle sweetheart. The video is cute but does get a little graphic toward the end.

http://www.curesearch.org/Lumbar-Puncture/#video

Today Keira has been in treatment for six months. Wow how time flies!

   We have learned so much over the past six months. Most of it we would really rather not know such as the names and side effects of cancer drugs, the intensity of the treatment plan for Leukemia , the way to smuggle extra calories into the belly of a stubborn four year old but most of all we’ve learned how absolutely wonderful people can be. We are blessed with wonderful friends, family and neighbors. Even strangers have said and done such wonderful things to encourage Keira. We marvel at the kindness and generosity that has been shown to us. I’m sure that when all is said and done and I think back on this time the fear and the agony of seeing Keira suffer will be just a vague memory but the way my heart warms when someone says or does something kind for us, that will always be with me. If you are reading this, you've kept Keira in your thoughts and prayers and I can’t thank you enough!

Last week Keira finished up one stage of her treatment and in two weeks she will start another. Her doctors are pleased with her progress and believe that she is responding well to the Chemo. They will verify that with a bone marrow biopsy some time this month.  In two weeks she will start the most intense Chemo that is on her “road map”. Her doctor told me to expect a hospitalization due to fever but the actual Chemo can be admitted outpatient which is much better for all of us. We still have a long way to go but we couldn't be more pleased with how Keira is responding so far. Please keep sending that positive energy………… It’s working!!!!

Keira is in for Chemo... oh and she is a star!

Keira was admitted for Chemo yesterday. We are hoping that everything goes perfectly and she is out by Friday night because there is a lot going on this weekend. Of the last three admissions she was able to get out in 72 hours only once so our fingers are crossed. Her doctors also know that we are trying to be out by Friday night so they were able to start her Chemo a little earlier in the day then they normally would.

On another note, we were filmed for the upcoming Alex's Lemonade Stand telethon in April and the ads have started running. Keira is going to love seeing herself on T.V!

Keira and Daddy

My husband has a role in organizing Comcast cares day. It is such a nice event, we get to spend time together and help the community. This year they captured this adorable video of Keira and her Daddy.

Always good to be home!

Keira was discharged around 5 P.M. last night. This was our toughest hospital stay yet. Some of the side effects of the Chemo are starting to occur and they make Keira very uncomfortable. She was as always a total trooper. We have to get through one more 4 to 5 day stay in the next couple of weeks and then we are done with scheduled admissions for a while. You can't really tell in the picture but Keira's hair is coming in, we know she'll loose it again but it would be cool if she had some coverage for the summer!

Back in for Chemo

Keira made counts so we are back in the hospital for 4 or 5 days. I keep thinking that this must get easier with time and I really really hope that is true. We are in a different area of the hospital because the oncology unit is full and it makes a huge difference. I hope this stay goes by very quickly.

Dancing Queen

Keira made her recital, we got home from the hospital a little after two and were there by 5:30. She did great and had fun. Her brother had an inflamed eye which turned out to be pink eye so we couldn't stay for the whole recital but she really enjoyed herself, looked wonderful and performed  well. We are so very proud of her.

Fingers crossed.

Keira did not clear so she was not able to go home today. She also spiked a fever of 102. I spoke to her Dr. about her recital (yep called the chief of oncology about a dance recital and he wasn't the least bit bothered by it)  he has a plan in place that should get her out of there by 10:30 tomorrow barring any drastic changes. Lucky for us super mom-mom is in town so she stayed over with Keira last night and is staying again tonight!

Clowning around getting chemo

Keira was admitted yesterday for her second round of inpatient chemo if all goes well we!l go home on Thursday. She is in great spirits, feeling well and having fun!

My tiny dancer

On Wednesday morning I told Keira that she could go visit her friends at dance class. This was the first time that she has been back since her diagnosis in December. She put on her tutu around 9 A.M. and was so excited to go see everyone. The girls at dance class were awesome and even helped her to do the moves. She participated in the whole class hour long class.

A while ago I found out that the dance instructor got Keira a tutu to match all of the other girls and that she was invited to attend the recital and go up on stage. This was really a big deal to me because when Keira joined dance she talked about "dancing on stage" constantly. She doesn't know that she is going to be in the recital because she is in the hospital for Chemo that week and there is always a chance that we won't be able to go but we are keeping our fingers crossed that she will be able to go. It is going to be a very special night for her.

Prom

The oncology unit "prom" was held on Saturday. We had so much fun! Keira really enjoyed herself. She was completely in her element mingling with everyone, urging her friends to dance with her and posing for pictures pretty much non-stop. The event was amazing. The team at St. Chris worked so hard to make this spectacular and it truly was. We are already looking forward to next year!

One down three to go!

Keira was admitted for Chemo on Thursday night. She did great and we were very surprised when they told us late Saturday night that we could go home around noon on Sunday. There was a painting event being hosted by "Kisses for Kyle" so we left the hospital picked up her brother and went to directly to the art studio. It was such a nice way to spend the day especially when we expected to be in the hospital until Monday. We'll have to do the overnight Chemo three more times over the next eight weeks but at least we have one out of the way.

Keira pulled the cancer card.... made us chuckle.

Keira's brother has a double ear infection. On Monday I took him to the Dr. while mom-mom watched Keira. When we came home Brendan wasn't feeling very well and mom-mom said to Keira "We have to be extra special good to Brendan he is really sick". Keira replied "Mom-mom you know I am sick too, I still have Cancer you know". This was the first time I ever heard her try that and it made us laugh a little. She is doing so well right now you could easily forget what she is going through.... but I guess she'll be quick to remind us. 

Tomorrow if Keira makes counts we'll be admitted for a few days. We've also agreed to allow a organization called CureSearch to film Keira having a spinal tap procedure. They are an organization that supports cancer research and provides information and resources to people affected by childhood cancer. It feels good being able to do something to contribute to finding a cure. I just hope it is what Keira would do if she were old enough to make this decision on her own. 

Science day, pizza and a new dress....

Keira was in the clinic on Tuesday and Thursday but was not able to be admitted. Her oncologists are not concerned. They expected a 1 to 3 week recovery time from the last round of Chemo. We don't go back until Thursday when she should be admitted. We were secretly hoping she wouldn't be in the hospital for Easter and are really pleased that she'll be home. Today was science day, a pizza party and "fairy godmother" day at the clinic. Keira had a blast. There is a "prom" being held on April 13th for the oncology unit. The "fairy godmothers" came today and donated dresses to all of the girls! Keira chose a beautiful dress and had fun modelling it. The things that the social workers at St. Chris do for their kids is truly amazing. It certainly makes going for treatment a lot easier!

The waiting is the hardest part

Keira wasn't able to be admitted to the hospital for Chemo because she didn't make her counts this week. We'll go back Friday to have her levels checked but they do not expect them to rebound by then. Now we just keep going to the clinic every couple of days for testing and one day they will admit her. Luckily she is feeling great. We had a great weekend, her sleepover was a success and she is enjoying time with her brother.

Keira is having a good week, today she decided to be snow white and she definitely enjoys having computer time without her brother around. We only had to go to the clinic one day this week and I'm pretty sure that is the first time that has happened since she started treatment. Next week she will be admitted to the hospital for Chemo and will be there for 3 or 4 days. She will need to be in the hospital every other week for the next 8 weeks for the same Chemo, since she  has not had this type of high dose Chemo yet so we are hoping she doesn't suffer too badly from the side effects. Overall she is in great spirits, eating well and not in too much pain. She will be having her first sleepover this weekend and we will do our best to have a  fun filled weekend before heading to the hospital.

Another wonderful week

Keira is having a great week. We were in clinic on Monday and Tuesday and we go back today but everything is going great. Keira has not had any negative reactions to her chemo and her appetite is back to normal just in time to enjoy all of the wonderful food my co-workers sent us. Feeling very fortunate and enjoying spending time with her.

Doing great

Keira is doing great. Having a birthday party for her kitty and enjoying time with her mom-mom. This week she is responding great to her medicine and has had a great appetite. Hopefully things continue this way for a long time to come.

Just a little something to celebrate my amazing daughter.

Keira is doing well this week. She had overnight Chemo on Monday and so far she has not had any fevers. I was waiting to update everyone because I'm afraid of jinxing it. This week was tough for Brendan and I, we learned that one of the little girls that was in the hospital when Keira was first diagnosed passed away. I only met her once but the news is still heart wrenching and my heart aches for her family. She also had ALL and was just around Keira's age so it hit close to home.  It also got me thinking about my Kiki and how much this blog has been based on her cancer. Of course that is what everyone is concerned about but I know that a lot of people have been sharing the link and many of you might not know Keira so I created a photo slide show for my little hero to celebrate how amazing she is. Keira has always and continues to be very outgoing. She is   very generous and caring and even with everything she is going through the type of kid who is always concerned about how everyone around her is doing. We enjoyed looking at these photos together today, I hope you do as well.

The Lady Bug Ball

Last night we were able to attend the first annual Lady Bug Ball hosted by Kisses for Kyle a local area non profit that supports families battling childhood cancer. It was a wonderful experience. We met some amazing people and heard many inspiring stories. Most of all we had fun. This was the first time that all four of us went out anywhere together since Keira was diagnosed in December. We are so incredibly thankful that organizations like Kisses for Kyle exist and that people are generous enough to donate their money and time to making this horrific experience a little easier for families like ours.

Happy Valentine's Day indeed.

Keira went to the clinic yesterday we found out that they are not going to have her come back for Chemo until Monday. Her levels are a little low for the overnight chemo treatment but her white blood cell count is high enough for her to fight off infection. Today we went to the Valentine's Day party at her brother, Brendan's school (where she used to go). She had a blast singing songs, playing with the other kids and eating pizza. It was very nice to get out of the house and go somewhere other than the hospital. She had a wonderful Valentine's Day!

Bald never looked so beautiful!

We've had two months to get used to the idea but nothing can really prepare you for this...today we shaved our daughters head. As usual Keira was absolutely wonderful, she told us getting her hair shaved tickled and Brendan "acts like such a baby when he has to get his hair cut". It would probably be tougher if she wasn't so absolutely beautiful, she really pulls this off! 

Keira is home!

Keira's ANC was high enough for her to come home today. She is playing with her brother and enjoying being home. She will need overnight Chemo as soon as her levels are high enough so one night next week she will be back at the hospital but for now it is nice to be home!

If you're happy and you know it....

Is there a Patron Saint of white blood cells?

Keira's  absolute neutrophil count (ANC) is still zero. She has had medicine for the past two days to help boost it but so far no luck. Apparently it can take days or weeks to rise so now we just wait. Keira is feeling great so we're just hanging out, reading books, watching movies and playing a lot. One of her new friends was admitted yesterday so if she is feeling up to it they will play today.

Good Morning

Keira is having a good day, her levels are still at zero so we can't go home today. This may be for the best since dad is home with some kind of nasty virus.

Renting a room at the hotel California.......

Keira's white blood counts went down to zero yesterday, this means she has no ability to fight off infection. She will need to stay in the hospital until they rise significantly. There is a slight chance that she can go home this weekend. With a lot of cancers chemo gets postponed when counts are down but with leukemia they really can't skip a treatment so Keira will get chemo today as scheduled. Despite being in the hospital she is feeling great. She has a ton of energy and has found ways to entertain herself such as hiding random things, turning her I.V. tubes into a jump rope, inventing new dance moves and using her hospital bed as a sliding board. Of course, several of the things Keira has hidden belonged to her nurses and twirling tubes causes the I.V. machine to beep like mad so she is getting a lot of attention. The only thing that bums Kiki out is not being able to see her brother. Due to the flu, no one under 18 is allowed to visit. They talk on the phone which is hysterical to listen to because they are always having two different conversations and when we finally get home there will be a ton of playing to catch up on. We're hoping the chemo doesn't cause any pain or fever this time.

Feeling much better

After two really tough days at the hospital Keira is feeling much better. The doctors believe she had a.virus and that it has passed. Her fever is gone, the doctors want to see her white blood count come back up so they can discharge her soon, maybe even tomorrow.

Another 3 A.M. E.R. visit and this time we get to stay.

Keira woke up a little before 3 AM Sunday morning in terrible pain and running a fever. The pain is a side effect from Chemo and the fever may be as well but her doctors don't know for sure. Unfortunately this time her white blood counts were also low. She still has a fever so it is unlikely that we will get to come home tomorrow. It is very difficult to see our little angel in pain, we're glad we have great nurses and doctors to take care of her and hope she gets to come home soon.

The only fever around here is dance fever!

Keira is doing great, she has not had a fever since Saturday. She gets to take a break from one of the medications that we suspect was causing the fevers so hopefully she'll stay that way. We were having a dance party this morning and I took this video of Keira dancing to her "favorite song". She really is an absolutely incredible little girl, just seeing her smile and play makes all of this so much easier.

Moving.......into St. Chris'

Keira continues to have fevers almost everyday. We've had to go to the clinic for antibiotics everyday except Wednesday and then an E.R. visit Friday night at 3 A.M. Tomorrow we have to go back to the E.R. at 7 A.M. because the oncology clinic isn't open and she needs another dose. Hopefully the fevers are just from the chemo but I'm starting to think that might not be the case and we might be dealing with an infection in her central line. We should know something more soon. Luckily she continues to be in great spirits, has a lot of energy and is doing very well overall. We know for sure that she doesn't have the flu. We're hoping we can keep it that way even with all of these E.R. visits.

We survived our first E.R. visit and all we got was this stupid bracelet

Sunday night after having an absolutely fantastic day with her brother Keira had a fever of 101.5, for a healthy kid this wouldn't even warrant a call to the doctor but for Keira this is bad news so we called the oncologist and he sent us to the E.R. Keira didn't have Pneumonia or the flu so they gave her three types of antibiotics and we were sent home around 4 A.M. We reported to the Oncology clinic for more antibiotics on Monday and she had a fever again last night so we'll be back there today. The fever is likely caused by one of the Chemo drugs we administer at home but they can not be sure that her central line is not infected so we have to get the antibiotics and hope that the fevers stop soon and there is no infection.

There will never be a medicine or therapy as powerful as a twin

Keira came home from the hospital last night around 7PM. Over the course of 30ish hours she had five different types of Chemo therapy administered. Amazingly, she is doing great and took it all in stride. Today she woke up with what seems like boundless energy and she has been playing with her brother all morning. I uploaded a video of them being silly. It is so nice to see here playing and having fun, I was not expecting her to have so much energy and be in such great spirits. Her brother can really bring out the best in her. 

Keira's treatment road map has changed since we found out that she is not in remission. She will require more intense Chemo and the treatment course has been lengthened from 2.5 to 3 years. Her doctors fully expected her to be “good risk” but now she is considered “high risk”. This sounds worse then it is, basically her curability rate changed from 80 to 90 percent to 75. Obviously this is not what we were hoping for but it could be much worse. At this stage, they expect to be able to treat her exclusively with Chemo therapy and there is no reason to believe that she will require a bone marrow transplant or radiation. That is really good news and we'll take what we can get

As you can imagine this news was difficult for us to hear and process. We are doing the best we can to be there for Keira but if I'm being honest our little girl is lending us some of her strength. I've never met a more courageous little girl.

Keira will go in for blood transfusion on Tuesday and more Chemo later in the week. As always the positive energy and good vibes that everyone is sending us means the world. Please keep Keira in your thoughs and prayers!  

Back to the hospital

We found out today that Keira is not responding as well to the therapy as they thought. The lab was able to determine that she is not in remission like she should be at this point. She will require more aggressive Chemo that has to be administered in the hospital so we'll be headed in tomorrow for two to three days.

Preliminary results look good

I spoke to Keira's doctor today. The preliminary results of the biopsy look good, she appears to be in remission. We will know more when the lab results are back but they expect to confirm that she is responding well to the therapy. On Thursday we'll meet with the doctor and hopefully they will have the full results.

That giggle is the sweetest sound in the world.

Keira has been off of the steroids since Thursday morning and she is pretty much back to her old self. She has been sleeping through the night, eating like a regular kid and is in very little pain. The past day and a half have been amazing. She played in the backyard, went for a walk and had two play dates where she actually got off the couch. She even asked for some of her Christmas presents and played with them. This morning she asked me for a cheese stick at 9:30 and I told her that it would be her only one for the whole day and asked if she was sure, she said yes and I gave it to her. She took a bite smiled a huge smile and said “except I already had the one that Daddy gave me” then she giggled and told me she tricked me. It was adorable. She has been so incredibly mature and too tired to be anything but perfect for the past month so seeing her behave like a four year old actually brought tears to my eyes. I can't wait to hear back about the results of her biopsy. I know when she starts back on Chemo this week it will be tough on her so it is nice to see her get a break and be able to be a kid again even if it is only for a few days. 

Saying goodbye to steroids!

Keira's surgery went well, her port is in place and the PIC line is removed. The results of her bone marrow biopsy will be shared with us early next week and depending on the results we'll find out what the next round of Chemo will be like. Everything that we've been told so far about Keira's treatment has been based on the assumption that she will be in remission as of today. Hopefully that will be the case and the next 2.5 years will be Chemo to make sure she stays that way. We are very excited that Keira is going to be off the steroids!

Surgery bound

Today Keira was cleared for surgery. Her white blood and platelet levels were just above where they had to be so she will be put under tomorrow around 10 A.M. to have her port implanted. They will also perform the bone marrow biopsy. I've attached a video that we made in the hospital on 12/7 just because I think it is really cute and I didn't get around to adding it sooner. I promise to update the blog tomorrow and let everyone know how surgery went.